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Lisa J's Story...

Where to start??
The beginning, I guess....

I am 33 years old, and have been obese my whole life. In July 2000, I had reached my all-time heaviest....285 lbs. Being 5'2", you can imagine how all-set I was carrying around all that weight!!

I decided to look into the "Atkin's" diet. After reading all the info. I could get my hands on, I decided to start the diet. After all.... the only thing I had to lose was the weight! To my surprise, the weight literally FELL off me. I very quickly lost 125 lbs. Bringing me down to 160, and from a size 24 to a 12! Oh, happy day!!! At around 12/01, I had plateaued at 160 lbs., but I was still quite psyched with the progress that I had made up until that point. I began to exercise like a maniac to "jump start" my metabolism, and get back on track. I had come to far to settle for the 160!!

I became more frustrated as the months went on, but still did not give up. Then, at around October 2002, I began to notice the numbers starting to go UP!!! I immediately changed some things about the diet.... I ate less red meat, gave up caffeine, ate even MORE green veggies than before.... I became even MORE focused.

The scale continued to climb, no matter what I did. I finally got fed up, and decided that there MUST be something wrong with me physically because in my mind, I was doing everything right. I had read that prolonged dieting can actually shut down thyroid function. All blood tests, of course, came back "within normal range" for all thyroid levels. My doctor did however, after listening to me go on and on about the power of "clinical diagnosis"...Fatigue, but unable to get a good nights sleep, inability to lose weight, MAJOR hair loss, and overall feeling of being in a constant state of PMS.... She agreed to try me on a thyroid med (Armour). I noticed after a few weeks on the Armour, that I slept a little bit better, my hair fell out less, and for some weird reason, I could breath better(?)..... STILL the weight was coming on.....

I had been tested for Polycystic Ovarian Syndrome (had a cyst rupture that had to be removed in 2002... I have ultrasounds frequently to make sure that everything is ok) All testing for that was fine....although I had noticed some serious hair growth on my chin, which I was having to pluck in the morning before I left for work, and AGAIN at night when I got home. I have "regular periods" (only lasting 4 days a time though)...I was becoming more and more down as the days/months passed. In August 2003, I began to get headaches behind my right eye, which scared me quite a bit. Finally...one day, by accident, I came across a web-site for Cushing's while punching in the word, "abnormal weight gain". To my surprise- I read about something that I had never heard of before. I could not believe all of the symptoms that I was relating to. I remember reading about how "rare" it was, and I began worrying about what my Doctor was going to think if I suggested that this was something I might have...(ok you crazy fat girl...whatever) I went to see her this past September 2003, to give it a shot. I told her that "something is wrong with me hormonally... I'm not right." She immediately began blood work. The next thing I know... She's sending me for an MRI of the adrenals to "rule out a tumor", as I had some elevated hormone going on. Blood cortisol at that visit was "normal". I got a referral for an Endo at that appt. as well.

So, now I go to see Dr. Robert Salzman on 9/12/03, where my weight was up to 193 lbs. I came right out and said, "I'm convinced that I have "Cushing's Syndrome". He was like, "O.K., we'll do a 24 hr. urine test to rule that out." ("ok you crazy fat girl, whatever" is what I heard) I set off to do my FIRST 24 hr. urine.....

Dr. Salzman personally called me at home on the following SATURDAY to report that on a scale of 0-50 "normal" cortisol urine test, that I was at 245! He told me that my adrenal MRI came back with no tumors, but they were enlarged. He also went on to say that he thought that a pituitary "growth" would be located, and he actually told me that he would be sending me into Boston (I live just south of Boston) to see about the surgery he was convinced that I would be needing, but for now, we will be going ahead with the low-dose Dex. Suppression test. (Weight at second appt. with Dr. Salzman a week later was 198) To his/my surprise, I was able to "suppress" on this med... The next step, a pituitary MRI, and another "baseline" cortisol urine. MRI showed "nothing", and the cortisol level this time was 100.(stopped the Armour Thyroid, as I did not feel any better being on it) I asked Dr. Salzman if I was oficially diagnosed with anything as of yet. He said, "I'm not sure how to label you yet."......

Time to send me into the big city (Boston) for another opinion... I saw Dr. James C. Melby at Boston Medical Center. Dr. Melby is a merit awardee of "NIH", and a member of the "Association of American Physician's", and the "American Society for Clinical Investigation". He has served on editorial boards of major journals, and on the "NIH Endocrine Study Section". He was HIGHLY recommended by Dr Salzman, the Doctor that got all of these tests rolling so quickly for me in the first place. I just saw him on October 29, 2003. My weight now...208. I cry several times a day... My head hurts... I am more and more exhausted throughout the day... My muscles hurt... I'm so cranky, that I must be such a joy to be around! Dr. Melby officially diagnosed me with Cushing's, but the cause continues to be a mystery... My ACTH is low... the cortisol remains high. (last urine test for Dr. Salzman (3rd baseline) was 114...) Dr. Melby listened to all of my symptoms, which I was trying to tell him through tears, and he looked at me and said, "I am going to help you." I know that you all know what it feels like to hear those words! I realize how lucky I have been so far with the testing process. I know that getting Doctors to even hear you is the first battle.

Is there anyone out there who can relate to being "up-in-the-air with what's causing the cortisol to be high? I have a long road ahead of me, but finding this web-site was SO comforting. As rare as it is, I am not alone. I am trying to remain positive, and being here with you all is really helping me to cope with things. It's all still sinking in....

Thanks for listening to me ramble.. I look forward to the "chat rooms", and any feedback you all may have!
Keeping the faith!
Lisa J.